Severe anxiety and spd - 4 year old

(12 Posts)
cockadoodledoooo Thu 22-Sep-16 21:54:53

My daughter struggles with anxiety and sensory overload and just started reception. Needles to say her behaviour and anxiety issues have gone through the roof.
Has anyone got any advice on how you coped as a family and how you manage these/ similar issues??

Any advice is greatly welcome

cockadoodledoooo Mon 17-Oct-16 00:32:58

Bump - anyone?!!

RockinHippy Mon 17-Oct-16 00:37:40

Is there any Pernicious Anaemia in your family? Have you been ill since her birth ? Gas & air overdose, are you vegan, does she have any gastric trouble? etc etc.

If so, please ask your GP to check her B12 & Folate levels, deficiency can cause the symptoms you mention & more

RockinHippy Mon 17-Oct-16 00:41:42

More info on this site...

HERE

My DD suffered with these as symptoms & it got worse over the years with a lot more symptoms too

B12 injections have made a huge difference to her

cockadoodledoooo Mon 17-Oct-16 00:54:05

Thanks for your response and advice. She has anaemia and vitamin deficiency which is managed by medicine/supplements. The dr described her as being visibly anaemic!!

We have now had a community peadiatrition appt and she has been referred further, this will take even more time. We have already been pushing for help for 2 years!

RockinHippy Mon 17-Oct-16 06:57:49

Oh bless her & I am so sorry you are going through this sad

On the plus side you now know it is a strong possibility, it took me 13 years to finally realise that & my DD ended up in a wheelchair, B12 injections had her walking again, sleeping again, SPD much improved & anxiety hugely better too, in under 2 weeks.

She looked skeletal/ghost like too, anxiety, spd & gastric trouble were early signs for her too, but it got worse over the years after she had various drugs & treatments that deplete B12, such as certain antibiotics & gas used for dental work.

Iron deficiency anaemia can actually be a symptom of B12 deficiency & Vit D deficiency often seems to go hand in hand with it (my DD & I both had that too)

B12 & Folate aren't standard tests, so too often aren't checked. They can also go hand in hand too & have similar symptoms.

You need to ask your GP if these tests (B12 & Folate) & her homocysteine have been checked. Homocysteine is the level of toxins that build up in her system if she doesn't have enough B12 to mop it up. If these tests have been done, you need to get a print out of her results. If the haven't been done, insist that these tests are done as a matter of urgency.

Too often Drs don't understand B12 & related results, kids need more B12 than adults, plus the tests are recognised by NICE as unreliable & so deficiency often gets missed.

Also look at her Eosophils (sorry that might be mispelt) this is a parasite marker, if there is no other obvious reason why she might have B12 deficiency, then a parasite could be to blame & are often missed.

In the link I have added below, on the links page you will see "Pat Kormics B12 Facebook Support Group" please join this group. It was thanks to them that I gained the knowledge to not only realise my DD has Pernicious Anaemia, but to educate her doctors & fight treatment for her

Treatment has been life changing, it has even improved her Ehlers Danlos Hypermobility symptoms, which again seems to be linked. Her allergies have gone, her pain is 90% improved & so much more.

The group can also help you with understanding how best to treat Vit D deficiency, NHS protocol unfortunately isn't great. Natural Vit D is far better than the prescription stuff & it needs to be taken with Vit K, Magnesium & fat to work. I switched our treatment to this & the difference was amazing. Bone pain is a big symptom of Vit D deficiency & it stopped completely with a change of Vit D treatment. My dad has recently seen big improvements with natural Vit D too. You need to do this with your doctors help though, they need to be rechecking her Vit D to see the improvements as too much can be bad for her too.

I really hope this helps

Poptart27 Mon 17-Oct-16 07:00:42

Please seek the advice of a Board Certified Behaviour Analyst.

cockadoodledoooo Mon 17-Oct-16 14:15:48

It's so tiring having to battle isn't it!
Thank you so much for all the information.

Her GP said she was fine, it wasn't until we sent a letter demanding further investigation to the head of the GP practice did anyone start listening. We have been made to feel like overbearing and pushy parents, it doesn't feel great!
I am also anaemic with vitamin deficiencies and it's exhausting, I psychically hurts at times and knowing she is going through the same makes me feel so guilty.

RockinHippy Mon 17-Oct-16 15:32:31

I understand too well what you mean cockadoodle we had to go through all that too, with the added pressure of a paediatric rheumatologist ignoring NICE guidelines out of ignorance & trying to block the B12d/PA

But there is light at the end of the tunnel, we got there & so can you & she can be well again, so can you at least much better than you are now.

Have you been diagnosed with B12 deficiency?? If so have they put you on injections yet??

I was initially told I didn't have it, but they later agreed that my levels were very low & did start me on injections, but refused the 2 week loading dose. I was struggling, so as I had had one injection & knew I wasn't allergic to the Hydrocobalamin. I followed advice on the group mentioned in my earlier post & bought supplies to self inject. This enabled me to be well enough to fight for my daughter.

Since the miraculous effects B12 injects had on DD,our GP has now educated herself & we both have a good treatment regime. It was a battle, but we got there & so can you -the group in the "links" of my weblink below can help you with that. Get copies of your DDs & Your own blood results so they can advise properly

user1471537877 Tue 01-Nov-16 10:33:31

Just to add to all the above, look at mthfr which is often involved

Our DD is severely affected on the sensory side and we have all the above conditions, I very recently added 5htp which is a neuro transmitter to her b12, folate etc and the change to her sensory issues has been nothing short of spectacular

ilovesushi Tue 06-Dec-16 06:13:00

This thread has been en eye-opener for me. My DS has spd, anxiety and lots of leg pain at night. As a much younger child he had a lot of serious respiratory issues and spent many months at a time on antibiotics. I was aware from blood tests that he often comes up deficient in magnesium but I don't know about B12 etc. The GP has always put the leg pain down to growing pains and my husband reckons he was the same as a kid. I have certainly never linked the various conditions up. However, when he takes magnesium I definitely see a happier calmer chid. Looks like I need to investigate more supplements?

Usernamealreadyexists Wed 14-Dec-16 19:46:34

Can these tests be done privately? Which good quality supplements would you recommend for a child? Very interesting thread btw.

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