Im in Ohio and need help NOW!

[feedjke]

Okay, my son was diagnosed with PANDAS a couple of years ago reluctantly by his Ped who said still doesnt really believe in it but nothing else fit. At that time there was really no info out there. He assured me it was no big deal and the episodes when like this, he wouild start some behavioral changes very noticable, my DH and me would ask ourselves do you think he has strep? Eventually a couple of week he would develope a tic or 2 out of nowhere and we would head to get a strep test and then some antibiotics and a few weeks later he would be better. This was always treated as no big deal. My son had his worst episode ever with multiple tics and his behavior is so argumentative and combative hes home from school today. Now he has always done well in school but I just cant explain this to that many people to send him. He is hard to deal with, my DH and I do whatever to keep him busy, TV whatever to avoid engaging in a conversation with him as he is so mouthy and argumentative. If you said the sky is blue he would get mad and start an argument about it. He is not violent, but has a short temper. We took him to the Dr and his strep was negative and I was floored. The doctor gave him 2 tsp amox. 250/5 twice a day to shut me up basically. So thats when I decided to jump online and see what I could find. I was surprised to find so much info no and thankful to find this site. I feel terrible that I let this Dr. tell me this was no big deal and have done basically nothing for my son. The amox. wont work I told them that, from past experience. I need a doctor here in Ohio or surrounding that will at least give him a stronger antibiotic. Heres the real problem, my husband started his own company and not making that much monwy yet, our kids get Medicaid as we tried private insurance for the family at 600 a month that covered nothing. I called a Dr. here in Ohio, Dr Demio and he needs 270 just to schedule an appointment and doesnt take any insurace and cant get us in until March? What do I do? Hes sick now, I dont have thousands of dollars now, they wont even talk about a payment option its all up front??????

 

The worst thing is I now realize that around the time we had the first diagnosis my son attitute changed and we just thought is was growing up, gaining independence, influenced by school. To the point that my son is no longer enjoyable to be around and he is unpopular at school and picked on because he has a weird personality. He is bossy, argumentative, short tempered, somewhat regressed for his age (likes things other almost 10yr old have outgrown) only want to talk about his video games or marine biology until it bores you to death. Does all the talking and no listening, in general he doesnt socialize well and doesnt have many friends. This is a complete turn aroung from who he was before the diagnosis. They happened around the same time but I just didnt put it together and since it wasnt like one day he woke up a different kid with strep I assumed they were just him changing and "growing up." And again not much help from my doctor who said all along no big deal, other doctors in his office even got snippy with me and treated my badly because I insisted on the strep test.

 

Any help?? I need him treated now! I doubt my Ped. will give me another Rx but if he does what should I ask for??

[dcmom]

Wow- I am sorry you and your son are going through this. Don't feel bad, it takes many people years to get pandas diagnosed (and I am sure many go undiagnosed). If you treated before with antibiotics, and that helped- that is probably what you would have done anyway. There are a few steps that maybe you can take:

 

First, see if maybe your pediatrician would have a phone consult with Dr Latimer, in Bethesda MD. She is great, and treats lots of pandas patients.

 

I would ask for a month of daily zithromax to eradicate any strep that may be hiding. Strep CAN go intracellular, where pen and amox won't help.

 

Also, see if your ped would consider prescribing steroids (a burst). This would be something like two weeks of a treatment dose and two weeks tapering off.

 

Follow this all up with prophylactic antibiotics- and see how he does.

 

Dr Latimer will be able to talk your ped through all of these prescriptions, and the science behind it.

 

There is also a research doctor (Madeleine Cunningham) that has created a test for anti-neuronal antibodies (to help possibly diagnose pandas). Pre- steroids, I would have this test done. This will give your ped some numbers to look at, Dr Latimer likes this test as well- so it would help you if you do need her at some point. They do ask for $200 for the test, but it is fine to pay what you are able. The test is best done during an exacerbation.

 

There are many knowledgeable and helpful parents on this board. I know there are a couple in Ohio that will be more helpful.

 

Best,

 

Eileen

[thereishope]

Where in Ohio are you? Ohio is a hard state to find doctors.

 

The Dr Latimer suggestion is good, but there is a hefty fee for a phone consult as well. I think in a different thread someone cited $400. It never hurts to call, tell them what's going on, and see what they have to say. Maybe they'll do a payment plan.

 

Did they run a culture or just a rapid? Can you think of anthing else that can cause a setback? A cold, allergies, any other virus?

[EAMom]

How much does your son weigh? You could give him advil every 6-8 hours and see if that helps. At least that might give you a hint, to help "confirm" the diagnosis, since many pandas parents fine advil helps.

 

Dr. K. will also answer e-mail for no charge (although he charges for a phone consult). http://www.webpediatrics.com/pandas.html

[ajcire]

Wow.. I totally get what you are saying. That is what I am going through with my ds. It's hard because my dh is still saying it's just him being a boy but what you are describing are the symptoms I am dealing with. No matter what is said he says the opposite. It is so easy to blow it off as just a behaviorial issue but at heart I too know it is more... We also see some tics only pop up during this time... usually in the form of throat clearing for us. You really described my ds though.. he is 7 and while in some ways seems too mature in other ways it is immature. The mouthiness, the quick to erupt over nothing.. it's very hard to explain it to people especially when your child is usually a kid people like to be around.

 

 

I am here learning from all these amazing parents too...

 

 

Okay, my son was diagnosed with PANDAS a couple of years ago reluctantly by his Ped who said still doesnt really believe in it but nothing else fit. At that time there was really no info out there. He assured me it was no big deal and the episodes when like this, he wouild start some behavioral changes very noticable, my DH and me would ask ourselves do you think he has strep? Eventually a couple of week he would develope a tic or 2 out of nowhere and we would head to get a strep test and then some antibiotics and a few weeks later he would be better. This was always treated as no big deal. My son had his worst episode ever with multiple tics and his behavior is so argumentative and combative hes home from school today. Now he has always done well in school but I just cant explain this to that many people to send him. He is hard to deal with, my DH and I do whatever to keep him busy, TV whatever to avoid engaging in a conversation with him as he is so mouthy and argumentative. If you said the sky is blue he would get mad and start an argument about it. He is not violent, but has a short temper. We took him to the Dr and his strep was negative and I was floored. The doctor gave him 2 tsp amox. 250/5 twice a day to shut me up basically. So thats when I decided to jump online and see what I could find. I was surprised to find so much info no and thankful to find this site. I feel terrible that I let this Dr. tell me this was no big deal and have done basically nothing for my son. The amox. wont work I told them that, from past experience. I need a doctor here in Ohio or surrounding that will at least give him a stronger antibiotic. Heres the real problem, my husband started his own company and not making that much monwy yet, our kids get Medicaid as we tried private insurance for the family at 600 a month that covered nothing. I called a Dr. here in Ohio, Dr Demio and he needs 270 just to schedule an appointment and doesnt take any insurace and cant get us in until March? What do I do? Hes sick now, I dont have thousands of dollars now, they wont even talk about a payment option its all up front??????

 

The worst thing is I now realize that around the time we had the first diagnosis my son attitute changed and we just thought is was growing up, gaining independence, influenced by school. To the point that my son is no longer enjoyable to be around and he is unpopular at school and picked on because he has a weird personality. He is bossy, argumentative, short tempered, somewhat regressed for his age (likes things other almost 10yr old have outgrown) only want to talk about his video games or marine biology until it bores you to death. Does all the talking and no listening, in general he doesnt socialize well and doesnt have many friends. This is a complete turn aroung from who he was before the diagnosis. They happened around the same time but I just didnt put it together and since it wasnt like one day he woke up a different kid with strep I assumed they were just him changing and "growing up." And again not much help from my doctor who said all along no big deal, other doctors in his office even got snippy with me and treated my badly because I insisted on the strep test.

 

Any help?? I need him treated now! I doubt my Ped. will give me another Rx but if he does what should I ask for??

[feedjke]

Im about 45 min SE of Columbus but I will drive wherever I need to. erica240 I know what you are saying, Its just so hard and I always feel like my friends look at his behavior as hes a bad kid or Im a bad Mom. They just dont understand why I cant nip it in the bud. PANDAS is so complicated, if I said he had ADHD they would be like oh I see, I say PANDAS and they think Im crazy just making excuses. Its so overwhelming and I feel like its cut me off socially. When ever we go somewhere with other kids Im just waiting for something to start and argument and when it starts he just wont stop and kids and moms are looking at me like this kid is crazy.

[thereishope]

I live in Cincy and have yet to find the right doctor here. For some reason Columbus is ringing a bell in my head. I don't have time now, but I try to research later and see what I come up with.

[Kayanne]

I'm so sorry that you are going through this...I know Dr. Latimer will speak to you child's pediatrician. The first time I spoke with her, she asked me to have my daughter's doctor call her.

 

He did, but they played phone tag, and then he was going on vacation....My husband and I hightailed it down to Dr. Latimer's office, and it was the best we could have ever done.

 

I also want to add that Andrea and Faith who work in Dr. Latimer's office are extremely nice. They are more than willing to answer questions...call them....see if they have payment plans or something...I thought I read on another thread that she takes Medicaid.

 

What I'm saying is...call and ask...the worst that will happen is you'll be told no, but somehow I find that hard to believe.

 

She is in Bethesda Maryland---right outside of DC...I think about a six hour drive for you.

 

Her office number is (301) 530-9200

 

Good luck

~Karen

[feedjke]

okay, i got my dr to give me cephalexin a 10 day dose and I gave him some Ibuprofen (300 mg for 115 lbs is this enough) I will see where that gets us until I can get in to a Dr maybe Dr. Latimer if I can get to Maryland. So in the meantime I would like to try some Vits and other natural products. Any suggestions on what and how much and when? I saw something about Kefir?

[pixiesmommy]

There are lots of good suggestions on the board. The combo that we are doing right now is:

 

Probiotics (some say to avoid the s. thermophilis strain, some don't have problems with it) - we use FLORASTER brand which is a good yeast, Kid Calm (which helps tics and is a magnesium supplement) and a quarter of a Melatonin tablet at night for sleep. I also use Flax Seed Oil (but have also used cod liver oil in the past) and I am dumping all the supplements into a smoothie so she'll take them. (My DD is 9, by the way.) We also do epsom salt soaks.

 

We also do the Feingold program, which is pricey to get the info... www.feingold.com to read about it.... but basically says that some kids have problems tolerating foods with salicylates and it gives you a list of what to avoid. The basic things to avoid are: anything with artificial colors or flavors , "natural flavors - because they can be made of anything, fruits other than tropical (ok list includes- pears, bananas, lemons, limes, mangoes, guava), tomatoes, almonds. Some kids are so chemically sensitive that smells can bother them as well (new carpet, scented shampoo, etc etc.) If you buy the program you get a list of "safe" items by brand which is really helpful when trying to rule things out.

 

Again, pricey, but I have heard PANDAS children do well with EFT and RIFE therapy, as well as chiropractic adjustments. I know of 2 that have been cured- or long stabilized- with the help of a chiro.

 

Manda

 

 

okay, i got my dr to give me cephalexin a 10 day dose and I gave him some Ibuprofen (300 mg for 115 lbs is this enough) I will see where that gets us until I can get in to a Dr maybe Dr. Latimer if I can get to Maryland. So in the meantime I would like to try some Vits and other natural products. Any suggestions on what and how much and when? I saw something about Kefir?

[thereishope]

Here's a link to an older thread about what people have in their "bag of tricks". Supplements are included.

 

http://www.latitudes.org/forums/index.php?...9&hl=tricks

 

 

 

okay, i got my dr to give me cephalexin a 10 day dose and I gave him some Ibuprofen (300 mg for 115 lbs is this enough) I will see where that gets us until I can get in to a Dr maybe Dr. Latimer if I can get to Maryland. So in the meantime I would like to try some Vits and other natural products. Any suggestions on what and how much and when? I saw something about Kefir?

[EAMom]

re advil: I would give at least 400mg if your son is 115 pounds. (Colleenrn might weigh in with more info. on doses.)

[ajcire]

I don't know if anyone else knows more about this but at one point my dr had suggested 5htp for my ds. He was having sleep issues and he felt it might help with that as well as mood issues. I can't say for sure if it helped because we used it at the same time that he was first put on antibiotics... so not sure which it was or both but something at that time worked.

[bronxmom2]

"To the point that my son is no longer enjoyable to be around and he is unpopular at school and picked on because he has a weird personality. He is bossy, argumentative, short tempered, somewhat regressed for his age (likes things other almost 10yr old have outgrown) only want to talk about his video games or marine biology until it bores you to death. Does all the talking and no listening"

 

A perfect description of my son, who prior to this I would have described as unusually empathetic. It's heartbreaking.