Migraine

Hi all this is really just a whinge.

I just got a letter from the childrens hospital yesterday regarding Ollie's appointment with the PN with a special interest in headache and the first avaliable appointment is is February 09.

Here in Australia you have to be referred by a GP to the specialist and then fax the referral to the hospital where the specialist is based. The hospital then mails out an appointment time.

Last week my husband rang the hospital every day to find out when we could get an appointment and did not get called back once. It took a month just to get an appointment and now we have to wait a further 4 and a half months for the appoinment.

It is just so frustrating. Our paediatrician has thrown his hands up. There is nothing else he can do and he does not know what more he can do for Ollie.

On a postive note Ollie is heaps better at the moment with only about one migraine a week and they are just run of the mill abdominal migraines with none of the scary HM symptoms thank god. His speech has really started to improve as well now 6 weeks after his last major HM episode. We really need to see someone who has some experience in treating HM in young children because we have about 100 questions we want answered.

Interestingly he has been discribing his migraine attacks so much better and by the time we get to see this specialist he will get a novels worth of medical history and a detailed migraine diary.

Heres hoping that the next 4 and a half months pass smoothly.

I'm so sorry about the long wait, daisy. Unfortunately, long waits to see migraine specialists are common in the US too, but it's worth the wait to see someone who really knows what he/she is doing.

Take care, and we'll all be hoping with you that these months go by as smoothly as possible. The extra diary time will be helpful to the specialist when you go, too.

Daisy,

I'm so sorry to hear that your wait to see a specialist will be so long! That's an especially long wait when you're a mom needing care for a sick child!!!

Here in the US, I waited for 4 months to see my HA specialist. As nut said, that happens a lot here, too.

Here, though, we have the option of contacting the specialist's office and asking about a cancellation list. Can you call yours and ask if you can be contacted if someone cancels their appointment? That may help you to get in sooner...Some patients even call every week to see if anything new has opened up.

Don't know if that's an option for you, but I thought I'd mention it just in case!

jenny

What the others have said about waiting a long time for a specialist is true. Hopefully it mean they are good.

I'm happy to hear Ollie is haning in, you sound a bit better too. My fingers will stay crossed for you guys.

Daisy,
It was so late last night when I saw this and I have had a bashing day today with the specialist's appointment but I wanted to stop by and give you, hubby and Ollie a huge .

I so hope that the new doc will have some answers for ya all and that he just keeps that speech therapist amazed at his progress !!!!

that something open ups just by some strange chance sooner fore ya all!!!!

/soothing hope filled thoughts
Julie

I'm so sorry you're having to wait so long. If anything unusual happens during the wait, I do hope your pediatrician will see Ollie and check him out.

The waits can be horrid. I waited nine months for my first appointment, BUT it was well worth it.

hugs to you and Ollie!

Just an update to let you all know what is going on for us. Thanks to every one for all the good advice.

Good news. We now have an apointment with the PN for the 15th of October. Heres what happened.

After reading on this website the july Migraine Blog Fest on patient doctor communication both my husband and I decided that the last time we saw the Paediatrician he just did not full understand just how frequent and ongoing Ollie's issues are. (Here in Australia a Paediatrician is a specialist you need to be referred to).

We had to wait 3 weeks to see the paediatrician again and decided not to take Ollie to the appointment this time so we could talk freely. (seeing the DR without the patient lol)

We went back yesterday with a novels worth of information all typed up and our list of questions which we gave to the Paediatrician at the beginning of the appointment. What a difference this made. He looked through it all and was really convinced by some of the quotes from Ollie we had included about how his various symptoms feel to him. He said "wow those are some powerful descriptions". He felt there was no way we could wait until Feb to see the PN and immediately sprung into action and made some calls.

It was great to finally get some understanding as previously we have just described verbally what is going on. The diaries helped him understand that it was just not the pain part but the ongoing neurological symptoms that are the real problem.

My husband and I feel much more confident in dealing with the DRs now.
Thanks again to everyone for posting about their stories. We have learned so much from this site.

Daisy what wonderful news. How great that you went without your son so you could more freely talk. While I know that is not always the best thing to do, I can understand not wanting to frighten your son in what you were discussing.

Good luck with the next appointment.

Cindy

Sometimes, I have had to make appointments with my kid's doctors without them. Sometimes this is the only way to discuss things about the kids without them hearing. My son will hear about some possible aspect of his diagnosis and will decide to be a case book example of it.

When he was in 2nd grade he read a phamphlet written for kids that described what ADHD. After he read it he went back to his school teacher and proceeded to inform her about ADHD. It took most of a year to break him of a lot of bad habits he hadn't had, and the it's not my fault but I have ADHD justification for everything that happened.

So Daisy sometimes talking as a parent without the child is a good way to best take care of our child's needs.

I am glad to hear that you are getting an immediate appointment. Best of luck for Ollie to get better from the HM monster.

Mary in NM

Great news, and great work, daisy!

Daisy,

I'm so glad to hear you were able to schedule an earlier visit for Ollie!

Please check back with us and let us know how your appointment goes!!

jenny