Hypoglycemia

Kat,

Meaning to ask you- why did you take Riley off of MAOI? I'm looking into new meds for my girls and would love input of what has or hasn't worked.

Also, my biggest concern with MAOI- what did you use as a decongestant when she was on an MAOI. Input from other parents would be appreciated.

Thanks,
Nancy

Hey Kat,

Sydney is like that too- can't sleep without a warm body next to her. My husband has the same problem with her- his arm feels like it will fall off. I can just lay close and hold her hands-it works. Sometimes just put my head close to hers and remind her that she is safe and it's okay to sleep. Give it a try.
Love to you both,
Nancy

Nan,

Yeah, I hate that they can't tell us what's wrong. I hope the girls are doing better. Riley is back to the no sleeping thing again...grrrrr. She will only sleep if I have her up next to me with her head on my shoulder, which I love to cuddle with her, but it is killing my arm and my back is feeling it to!!! I am a side sleeper and i have to sleep on my back and not move if I want any sleep at all. I tried to get her to sleep without being on my shoulder the other night...well I only got 2 hours of sleep, so I am going to have to figure something out. My bags are getting HUGE!!!! How are the girls doing? They have really grown up and are so beautiful!!! Give them some hugs for me!!

I'm so sorry to hear that Riley and you went through all of that.

My girls just went through strep, brochitis, low oxygen, hospital and then yeast infection!!! UHGGGGGG! My girls were miserable, non-stop crying whining.

The big tip off was lots of leg kicking mixed with the mood. Poor things... need to itch and can't!! ....and they can't tell us what's wrong. With all of the other things to remember, I always forget to look for yeast infections when they have bouts of antibiotics!

I'm glad to hear Riley is doing so much better.

Blessings,
Nan

Lisa,

I know this sounds crazy but Riley's seizures have gotten better since she was at the hospital!! She is sleeping 90% better also!!! !!!! Who knew!! She is slowly getting her appetite back...thank goodness. She has gotten a yeast infection from all of the antibiotics though . Grrrrrr. I have to make an appointment on Mondayto have her urine checked to make sure the kidney and bladder infections are gone but so far, so good. Poor little stink butt. I feel so very bad that she was going through those things and didn't know. It really sucks when they can't tell you what's wrong. Anyway, I will let you know how she donig.


Hugs,

Hi Kat

How is Riley now...have you had some more good nights , are the seizures back under control? she has been through so much poor thing.

I hope you managed to get some rest

give her a huge hug from us
Love
Lisa x

Hey guys,

We are back home today from the hospital. Riley had a kidney, bladder and urinary tract infection. They also cleaned her bowels out (she was moderately backed up). She was on a feeding tube until yesterday morning. She seems to be doing better now. I hope that this is what caused it all...the doctors seem to think so. Riley lost 10 pounds in one month . It has taken her so long to gain weight and now we are back to the whole trying to fatten her up again...but of course, it will take a while. She went from 72 lbs to 62 lbs. She actually slept through the night for two days in a row and only had TWO seizures the whole time!!! Her sugar leveled out..thank goodness . They think because her body was in so much stress from the infection that it caused the sugar problems. Anyway, I am going to try and get some much needed sleep ....although she slept, Mommy didn't!!!

Hugs and Love

Dear kate,

We think about you !!!!!


Dear Lisa,

Zain is back in the human world. His bodytemperature is under controle, bloodpressure stays normal , sugar is looking for his balance but the downs are not so scary anymore.

What happens ? What we think because we saw it this week two times.
The first day he was in the hospital because he vomited a lot that week. Some of it , came down in his breast so he had also a litte infection. they gave him an infuse but they did it wrong. All the salt come not in the blood but under the skin. So his leg started to swelling up and give a lot of pain. Because he was sick and got extra pain of the legg his body started to get in a stress-situation. At that moment the body makes cortisone what has an effect on the insuline. So then the dopamine ,normally, has to do his work. But our childeren has non of that.

Zain didn't react very well an the pergolide. So our doctor decide to use back again parlodel and to go down with the pergolide. So at that moment Zain was still on the dose of parlodel of 3x 0.5mg daily together with 3X0.03mg pergolide.
What I understand is that parlodel is on the receptor D2, what is important for hypoglycemia, and pergolide on receptro D1.

So at the moment zain's body got in a stress-situation, this 2 dopamine-agonist started to fight with each other. they couldn't find there place.... So eather there was no any dopamine-agonist the handel the extra cortisone and insuline. That day also Zain eated no so much....and then you can guess...they get in trouble...with bloodpressure,bodytemperature and everything...

Thank God, our childeren are heroes...he is doing fine now.

We started to change again his medication. Sofie and me meeted each other two weeks ago. So, Vincent is taken 600mg vitamine B, Zain now 500mg B6.
We gonna start mirapexine what is for receptor D2
and D3. A got soon a schedule from Sofie how to climb up. We started yesterday for 1X0.03mg mirapexine and 3X0.5mg parlodel. They can't fight because they use the same receptor. The plan is to stop the parlodel<<<<<<<<;
So, we shall see if it is worth!!!!

Me, I feel a little bit dizzy


Thanks for the support.

Love,

Ann and zain

Please give your brave little girl huge hugs from us and hope she's on the mend very soon. If she's in hospital for a while please let me know where!

Take care and lots of love to you both
Lisa xx

Hey Lisa

Well we are on our way to the hospital. Riley is being admitted to clean her bowels out again, x-rays on her dislocated hip and for some tests on her sugar levels. She seems very worn out lately and has lost alot of weight . Hopefully we can get her back on track .
Anyway, i will let you know the outcome when we get home.

Hugs

Hi Kat

Interesting though Riley's sugars may not be the same each night. Why not try taking her sugars before her night time drink for a few nights just to see if each time is roughly the same, it sounds as if may not be.

Between the two nights were Riley's evening feeds at the same time before her evening drink and bed?

Maybe an idea to test Riley before she eats to see how low it's going...also record the readings and complete a food diary you could be saving yourself a lot of hassel when you see a glucose specialist as this is probably what they will ask for. If you keep a food diary for a week while you are waiting for an appointment and take Riley's sugars at the same time each day you can take this information with you, i.e

First thing in the morning (on waking)

After breakfast

Before lunch

Before dinner

Before bedtime and drinks.

Record all the times...

How often does Riley feed during a normal day, what is the calorie/sugar content?

Hi Ann

Last time Zain had these troubles was a night he didn't have his milky/sugary drink before bed...did anything happen like this again?

Do you think Zain has gained any weight or grown - are his medications at the right dose. It sounds as if his autonomic functions are suffering which all relate to the things you are talking about. Make sure he is taking enough liquids to keep his hydration up as this can help with blood pressure too. Regular sugary drinks for hypo attacks. If you were asked which medication do you think Zain takes that help with these issues which one would it be?

Ask your doctor to see what zain's weight to dose ratio is at the moment in case its changed. You may need to alter medications again....

I would consider doing the same as what Kat may have to do for Riley...keep a food diary, test sugars and be refered to a glucose specialist via your consultant to have a full glucose investigation work up.

These are very dangerous issues for our children...I would treat them very urgently and make sure your doctor is hearing your concerns.

I'm so sorry for you both, these are very scarry times...lots of love to you and huge hugs for Riley and Zain

Keep in touch
Lisa xxx

Lisa....The normal range in the US from what I have been told is 70-120. I tested her yesterday morning after she ate and it was 96. I gave her a half of can of soda before she went to bed along with her usual sippy cup of water and she slept through the night!!!! Of course I did the same thing last night and she woke up around 5 times, so who knows. Gonna talk to her doctor about getting a full workup done on her like you suggested. Thanks for the info.

Ann....very scary what Zain is going through. Riley and I will be praying for him.

Hugs

Hi Ann

I'm so sorry to hear Zain has been so unwell again...is it possible the hypoglycemic attack brought on the seizure.

Before Jake was diagnosed he dehydrated with low sugar whilst on holiday and this caused a petit mal followed by a grant mal seizure, this left him in a semi-conscious state and he was intensive care for a couple of days. We didn't really know why it happended but I think the rise and fall in sugars may play a bigger role in seizures than we think. How are you monitoring his sugars now?

Love
Lisa x

Hello Kat and Lisa,

For the second time in his life Zain got a hypoglycemia too. It was on sunday, sugar level, belgium rates, 12 , what is close by death. He got at that moment seizures too. Raison not know... nothing was really changed in his medication etc....
Now still he can't keep his sugar by himself, even bodytemperatures and bloodpressure.

We pray for the help of God.

Ann and zain

Hi Kat...when you say it was 66...is the normal range in the US the same as the UK which would be between 4 and 6. Checking sugars once isn't going to help you understand whats going on. You need to check them at regular intervals for a week.

66 in UK terms is very high (hyperglycemia).

Although the reading was very high, have you taken another yet before food? And do you know the sugar content of Riley's food? does it contain alot of glucose? If you are inactive your sugars can stay high too as exercise helps bring down the levels.

In AADC it is known that children suffer with hypoglycemia (low sugars) and these should be monitored. The regulation of sugars is not completey understood in AADC, although I believe most families agree that there children have a problem with regulating sugars.

It is possible that if Riley is prone to seizures (which she is) that the swing in glucose levels could be triggering them. A drop to a low level sugar at night could be a trigger of night time seizures as your sugars do naturally drop when you are asleep. Has any of your Dr's done an extensive glucose tolerance test for Riley. Maybe you can get to the bottom of the seizures by looking more into the irregular balance of glucose (common in AADC). A secondary factor for riley could be that this fluctuation of glucose triggers her seizures and depending on whether it be hypoglycemia and hyperglycemia may be determined by the type of seizures shes having. i.e. tonic clonic could relate to low sugar

Has Riley been check for Diabetes?

I think you should be refered urgently to a Specialist in Diabetes and Sugar Irregularites for extensive glucose tests. consistently high glucose levels (and low glucose levels) are very dangerous.

Let me know how you get on

Much Love
Lisa x

Anyone have any info on our kiddos having hypoglycemia problems? Riley is having a rough spell.....I checked her blood sugar for the first time today and it was 66. This was after she ate lunch but then vomited it up. She has started losing weight and really doesn't seem to have an appetite. I thought it was from a new seizure med but she hasn't taken it for 3 weeks and was only on it for 2 weeks. She got better after I took her off of it but now is doing the same thing as before. She sleeps all day long and is up almost all night long having alot of seizures. Sigh . Any suggestions???????? Thanks