Are they missing something?

I am looking to brainstorm about my little girl.  She is 7 years old and diagnosed with Type 1 three years ago.  She was very healthy up until then.  After that she started getting a lot of kidney infections.  After 4 hospitalizations for it they did a test and said she has a level 1 (which is low) kidney reflux.  She has to take an antibiotic for it every day to keep away infection.  They also said she had megacolon and slow moving bowels.  They put her on a gluten free diet and she has to take more meds to help her bowels.  Last year the teacher noticed that my daughter was struggeling with some things.  She talked to me about it and I had her tested.  They said she had ADHD.  I did not want her on any more meds so we decided to work on it at home.  In November she was asleep in my bed and had a Grand Mal seizure.  The next day she had another one.  I took her in and the EEG said she had irregular brain spikes ever 10-15 seconds.  She is now on anti-seizure meds.  She also was complaining of headaches and they have only gotten worse.  She has been waking up screaming about how bad they are.  They seem to get better during the day and she can tolerate them but she can not tolerate them at night.  She complains of "not feeling good" most of the day but her blood sugar is always fine.  They have tried different meds for her headaches and nothing has helped.  They are now planning on doing a spinal tap to check for IIH.  I had never heard of this before but I guess it is rare and is when you make too much spinal fluid.  I can't help but think something has to be going on for all of this to be happening to her.  She also has seen a neuro-psychologist who just told us her working memory and processing speed are slightly above being considered retarded.  I am so confused how this can happen in three years.  Her first four years were pretty healthy and now I can't seem to keep her healthy at all.  If you can think of ANYTHING I can look into or you think they might be missing please let me know!!

I'm so sorry I hope that everything works out ok

Hi Kathie.  I'm sorry, I wish I had something, anything, to offer you by way of insight or comfort.  My daughter and I will be sending your little Destiny our hugs and will be thinking about her.  Take care of yourself.  xo

Kathie, I feel so terrible for you and Desitiny having to go through this.  I think you're right that something is going on... some underlying issue that they haven't identified but that must be influencing all of this to happen so quickly.

I'm afraid I can't be much help.  The two most potentially helpful things that popped to mind probably aren't new thoughts for you:

First, I wondered when her headaches started.  Was is not long after starting the antisezure meds?  I know they can cause side effects, so if the timing fits then you might talk to the prescribing doctor about whether that could be it and if there are other medications that might be worth trying instead.

Second, my goodness, so many doctors!  I hate the thought of throwing yet another one into the mix, but I think I'd consider a diagnostic specialist.  Someone whose entire career is dedicated to looking at unusual cases, connecting the dots, and see a bigger picture.  (Have you ever watched House?  That's what they're doing on that show... in a greatly dramatized way!)

It's just a thought, because I think your instinct that all of these things are somehow connected is a good instinct.

Kathie, I'm afraid that all I can offer you and Destiny are my prayers. Prayers that you find the underlying problem, and that Destiny feels good real soon.

Thank you Sam, Nichole, Elizabeth and Donna for your kind words.  It is amazing what us parents can handle.  I can only imagine how the kids handle all this.  My daughter just hates school and she is only a first grader.  Kids can be pretty brutal!!

Elizabeth, how do you find a medical diagnostic speciaist?  I have never heard of that but it sounds like something I should look into!

Kathie- We have a wonderful diagnostic group at our Children's Hospital (Pittsburgh). Don't know if you have a Children's Hospital close to you but, I bet most Children's have a diagnostic group dedicated to pediatrics. I hope you get some answers soon!

Kathie is probably right about  most large hospitals having a diagnostic team.  I think teaching colleges, usually ones connected to a university, are great bets as well.  You may be able to ask your general practitioner or pediatrician for a referral, too.  And I don't know if your insurance has this feature, but I'm able to go on their site and do a "doctor search" that allows me to tell them what kind of specialist I'm looking for and they'll give me names of all the ones in their plan.  From there, I'll do a little research on the web.  So that might be an option for finding one.

I am so sorry to hear this. You and Destiny are in my prayers!

You might also consider contacting a place like the Mayo Clinic - it would be some expense to travel to one, but they also specialize in a team approach and are very patient focused looking at the big picture of what could cause all of this. You could contact them about just getting your records sent and see if they would recommend coming in or would refer you somewhere closer to home.

I have a friend whose son has multiple physical challenges, he has autism and is on a special diet (gluten free, dairy free). They have also tried meds because he has been dx'd as bipolar as well, and the meds always made him feel HORRIBLE. So they are just managing it through other means. However she did get him tested and he had very high levels of heavy metal (mercury, lead, cadmium) in his blood - which can be treated. His doctors think that he may have a problem getting rid of them - like you or I would - and so they just build up in his system. Maybe that is something to look into?


JDVsMom, I love the Mayo Clinic idea!  They have an awesome reputation.

OMG Kathie, the poor thing- sounds to me that you have a lot more going on than just diabetes.  After reading many of your responses, I have to say the advice about going to a diagnostician (like House lol) is the one I'd definitely follow.  Seizures can be connected to diabetes, but sounds to me that this is not the issue- I'm not a doctor- just an advocate- I know whatever you do, please don't stop until your daughter is healthy again.  Endocrinologists, neurologists, Diagnosticians- these are the doctors you'll be needing.  Please let us know how she's doing.



Thanks everyone for all your support.  I am going to look into the Mayo clinic.  There is one in Arizona and I will be taking my daughter is U of A in a couple months so I am going to try to get it.  She is getting a spinal tap done on Monday so I will let you  know if anything comes up.

Thanks again, you are all amazing!!

Though I am certainly not a medical expert nor in the profession, I would recommend having them look at her white cell counts first. To have such a rapid progresssion of conditions over such a short amount of time is very unusal and no amount of brainstorming here by the general public will get you the answers that can only be found through close observation and extensive testing a prfessional medical institue can offer.  With many autoimmune related diesease like diabetes there is a tendency to develop other problems with the endocrine, nevous, and cardiac systems in the body.

Though I am sure i am nothing like your daughter with respects to what she is now enduring I am example of this.  I got scarlet fever at the age of six, fell into a DKA coma eight days after my seveth birthday and survived. My immune system attacke my pancreas and I developed type 1 diabetes. My immune system then attacked my thyroids and I developed hypthyroidism. I starting having "black outs" as a teen which was determined to be seizures caused by my diabetic nueropathy( again immune spawned issues dealing with my nervous system).  I then developed gastroparesis or GP as we call and now at the age of 29 I have to contend my immune going after my adernal glands and possibly effecting my prostate.  The body is a very interconnected system of networks and functions. One greatly effects the other.  Seriously have them look at your  daughter's most recent illnesses and white blood cell counts.  Any change in food, diet, activity, or behaviour. These are the clues they need. At the very least you would be able to rule out the immunity related variables and that will help them find the primary cause of these system errors and malfunctions.

Again I am no doctor and I dont know much but hopefully that wil help you and your daughter in some way. With confidence, hope and a good medical team I am sure you will find the answers. Dont give up and don't lose hope or faith Kathie.