WE ARE APPROVED FOR THE IVIG !

[melanie]

I just recieved the call from the neurologist We go Monday the 31st for the IVIG and my insurance company approved it we just explained it to danny and even he is happy I am feeling such a relief I cant even explain how we are feeling 1 because we are getting treatment and 2 the insurance is covering it please pray for us I dont have all details yet Im waiting dfor the md to call us tomorrow what questions do I ask?

 

Melanie

[colleenrn]

Melanie,

That is awesome!!! I wish you the best of luck!!

Colleen

[Megs_Mom]

Congratulations! That is so awesome, I love these stories. I cannot wait to hear the results afterwards.

 

I'll let someone smarter than I (and there are so many here) answer what to ask, but I know that you do want to be sure they have tested him for iGa deficiency (make sure he does not have) before doing the IVIG. I think this take a few days to get back, so just be sure they have already tested for this, otherwise they can have an allergic reaction.

 

Hope it goes so very well!

 

I just recieved the call from the neurologist We go Monday the 31st for the IVIG and my insurance company approved it we just explained it to danny and even he is happy I am feeling such a relief I cant even explain how we are feeling 1 because we are getting treatment and 2 the insurance is covering it please pray for us I dont have all details yet Im waiting dfor the md to call us tomorrow what questions do I ask?

 

Melanie

[fuelforall]

Terrific news! May it bring you the success you crave!

 

Now, as you are in New Jersey, could you share what insurance plan went along with the treatment for PANDAS? It's one of those questions everyone eventually asks, as you can see from other posts.

 

Best of luck!

 

Michael

[ShaesMom]

You can google IGA deficiency and IVIG to see the risks. IVIG is predominately made up of IGG but there can be very, very small amounts of IGA (basically as a contiminate). If someone has an IGA deficiency they are at a greater risk of having an anaphylactic reaction to the small amounts of IGA that may be present in the IVIG. I do not believe that it is routine to do test for an IGA deficiency prior to IVIG. When my dd had all her Ig levels checked it took about two weeks to get the results back.

 

Read up on the side effects of IVIG before you go in so you are prepared. Are you having it done at a hospital or infusion center? It is very important that the nurses keep checking on your child every 15 minutes. Don't let them go past 30 minutes without checking temp and blood pressure. At the first signs of a headache, neckpain, nausea, increase in temp or change in blood pressure, they should slow the rate down. Make sure they start slow, around 9, and increase it slowly. If you are having it done at an infusion center they will likely be more educated about how to infuse than the nurses at a Ped ward who do not do it every day. Do not be in a hurry.

 

If your doctor does not do so, make sure you medicate beforehand. Motrin and Benadryl are commonly given beforehand for side effects. Some doctors will give a steriod as well. Get a RX for EMLA cream or ask for it. This will numb the IV site. If you get the RX, pm me and I will tell you how to apply it and where to apply it. I would give motrin & benadryl the night before and the morning of. I assume you are doing a two day IVIG, continue to give the meds throughout day 1 and day 2. I would also keep them up through day 4 & 5. This is common amoung those with immune deficiencies who receive monthly IVIG.

 

Give Danny plenty of liquids the day before and throughout. This will help with the side effects. when I say plenty, I mean a lot!

 

If Danny complains at all of neck pain you need to tell someone right away. Asceptic meningitis is a possible side effect. If he experiences any neck pain at home, take him to the ER.

 

My dd had vomitting at the beginning of day 2 and throughout the morning. She also spent the majority of day 2 asleep. She had a severe reaction and should have been kept in the hospital but the nurses and her Ped didn't know what they were doing. Her reactions lasted through the entire next week.

 

She has since had another round of IVIG and scheduled next week for round 3. Minor side effects with round 2 but the nurses knew what they were doing. She has an immune deficiency in addition to Pandas so IVIG will be monthly.

 

Lastly, their are people all over the world who receive IVIG every 3-4 weeks. Some have been doing it for years. So, while I completely understand how scary it is to have it done on your child, please know that it is very safe and that serious reactions are rare.

 

Try the below link for a guide from the Immune Deficieny Foundation written for nurses. The publication has some good info on possible side effects and the overall procedure.

 

Good luck on Monday & Congrats on getting insurance approval!

 

http://www.primaryimmune.org/publications/.../book_nurse.htm

[ShaesMom]

Another good place to learn more about IVIG is www.IGLIVING.com You can search past articles.

[dee45]

Good luck Melanie thats wonderful. i will keep your son in my prayers .

 

Deanna

[melanie]

Good luck Melanie thats wonderful. i will keep your son in my prayers .

 

Deanna

 

 

Thanks and i have BCBSNJ PPO I dont know how the md put it in to them Im pretty sure he went PANDAS I know he was concerned because danny also has aspergers .We are having it done at Jersey Shore Med Center I spoke with one of the Ped nurses today she didnt have alot of answers but I think they were real busy I will keep you posted Oh we are going for 3 full days

[melanie]

Im gettining nervous Is this normal? Anxious but nervous This is going to help ...yes? Then I m thinking what if it doesnt? Then what ..Just needed to share..Melanie

[ShaesMom]

Im gettining nervous Is this normal? Anxious but nervous This is going to help ...yes? Then I m thinking what if it doesnt? Then what ..Just needed to share..Melanie

 

I was extremely nervous before the first IVIG. I think it's definitely normal.

 

Is he having IVIG on all three days?

[melanie]

Im gettining nervous Is this normal? Anxious but nervous This is going to help ...yes? Then I m thinking what if it doesnt? Then what ..Just needed to share..Melanie

 

I was extremely nervous before the first IVIG. I think it's definitely normal.

 

Is he having IVIG on all three days?

 

As far as I know yes 3 days

[ShaesMom]

Im gettining nervous Is this normal? Anxious but nervous This is going to help ...yes? Then I m thinking what if it doesnt? Then what ..Just needed to share..Melanie

 

I was extremely nervous before the first IVIG. I think it's definitely normal.

 

Is he having IVIG on all three days?

 

As far as I know yes 3 days

 

 

So I'm just curious--will he be receiving the dose that Dr K recommends over two days or is your doctor doing something completely different?

[melanie]

Im gettining nervous Is this normal? Anxious but nervous This is going to help ...yes? Then I m thinking what if it doesnt? Then what ..Just needed to share..Melanie

 

I was extremely nervous before the first IVIG. I think it's definitely normal.

 

Is he having IVIG on all three days?

 

As far as I know yes 3 days

 

 

So I'm just curious--will he be receiving the dose that Dr K recommends over two days or is your doctor doing something completely different?

 

 

Im not sure if hes following Dr.Ks recomendations Im pretty sure its 3 days remember danny is 15. He is his Neurologist the head of neurology of a major hospital and uses IVIG often for pandas patients , unfortunatly hes away this week.

[ShaesMom]

I didn't realize your son was older. Good luck-I hope it all works out okay!

[dee45]

Melanine.

I know how much you have been through by reading your posts so my prayers to you, your family and Danny. hope everything works out.

 

Deanna