Thursday, November 20, 2008

Migraines, CSE, hassle of all hassles...

My son (just 7) has been getting migraines since he was really little. Although it took a really long time for me to recognize then as such since he was not yet verbal enough to give me all the signs I needed to properly identify his headaches. Now that he is older, and can give me better information I realized he had all the classic symptoms, pain behind one eye, sensitivity to light and noise, then the vomiting (sorry!) followed by sleep and then a general ache for a day or two.
So finally, in July, I took him to our family physician who recommended that we see a neurologist. My husband had an aneurysm that ruptured (there's a whole other story) and I had migraines as a child. So to be safe, he suggested we go see a pediatric neurologist. We went to Stony Brook and saw Dr. Gail Schuman, she was absolutely fabulous and made great dietary and supplement suggestions, as his occurrences are not frequent enough to require medication. However, in the course of her exam, she noticed some weaknesses which prompted her to ask about some of his fine motor skills. He is not reading or writing with any great success and he cannot tie his shoes or accurately button a dress shirt. These are not things which worried me, as he is a boy, he has on October birthday, and he is just not motivated to write. He did learn how to ride without training wheels on his 3rd birthday, he fed himself early and has a crazy mastery of sports. But, his Dad and all of his uncles and his grandfather all went to college on full athletic scholarships, so again, I was not connecting any dots.
In any case, the neurologist wrote a prescription for a PT and OT evaluation as well as a neuropsychological battery. All Greek to me, but we have been getting an education. Firstly, dealing with the school district for services as a homeschooler is a nightmare. And we have a pretty compliant and, dare I say, helpful district. I sent them the letter requesting the PT/OT evaluation on 9/6/2008. It took numerous phone calls before I finally received the packet to fill out the official request just before Halloween. This is a lengthy form asking about social and educational skills, home setting, language and other minutia. As my son's primary teacher the task fell to me to complete the form. At the time I received the packet I also received a letter saying that I would be contacted by a District Psychologist to go over the form and if he/she approved it the process would begin. Well, it wasn't until this week that I got a call from the Elementary Psychologist, who was delightful. Thank goodness, because upon review it became painfully obvious that I had not filled out the form adequately. I was trying to be concise, which did not accurately convey the nature of K3's problems. So I was sent home for a do over! I felt like I was 10 :0 But I appreciate her time and am glad she was helpful and sympathetic to our concerns. I redid the form and will meet with her again on Monday to get her signature and have the CSE request forwarded to Pupil Personnel Services. Now, the monkey wrench in this stage is that we have completed a marking period and therefore have to send a quarterly report of our children's progress to PPS. Well, as a result of all the difficulties my son has been having he has not completed all of the work that we delineated in our Individualized Home Instruction Plan (IHIP). Fortunately I have never been late with anything until this year, and even so have only been late with my son and not my daughter. So I called PPS and was told not to worry, that they will note the file. We shall see.
Now, the neuropsych is a whole other story and another nightmare. But that is a post for another time.


hmbb99 said...

I've had migranes since I was 4 and still have them. They are not fun. Unfortunately I have passed them on to my daughter as well. I also just came to learn from my infant son's neurologist that migranes, vertigo(which my mother, daughter and I have) and seizures are all related. I wouldn't worry that K3 can't tie his shoes because neither my 9, 6 or 3 yr old can tie theirs. I am interested in seeing what the neurologist does tell you so please post an update.

Kentucky_apple said...

Hi K~,

I saw your note on my blog. I just read yours concerning K. Z~, my son who is 9, also has had migraines from a very young age as has E~, my daughter. I have migraines as well.It is hereditary in my family. Since I knew it was hereditary I knew what was happening when it first occurred in each of the children. The doctors wanted to perform genetic testing on Z~ but I did not want that. He is much like your son in that he has trouble reading and he did not learn to tie his shoes until this year. I am thankful that God allows me to home school my children for I can only imagine the teasing that Z~ would get from others his age. None of his friends tease him,as they know about what causes his problems so I am also thankful that God has placed some pretty awesome people in our lives , including you, Sis. Have a wonderful Thanksgiving. The children and I are covering you and the family in our prayers.

Blessings and Love,

MamaCole said...

Hey there. As you know, my 12 year old is suffering from migraines a lot this fall. about 3 years ago it was dizzy spells and he was even diagnosed (after EEG's) with seizures. It is all related, and all very complicated and imprecise. I feel your pain.

I can tell you that I know your Neurologist personally - I met her when she was still a resident and my son was first "sick". We also attend the same church. She is a wonderful and warm person and a great doctor. It is good that you found her.

I feel your pain through all this. My son has missed a lot of school and it seems as though the trigger is school itself. It's been suggested to me to consider homeschooling. I just don't know if I can do it, though. I know what you mean about other peoples opinions and judgements about the choice to do so. I've heard it already - and I'm not even doing it!

For now we've got teachers coming to our home to give him one on one instruction. This works very well for me!

Let's keep in touch.